Children with EB are often called “butterfly children” because the fragility of their skin is likened to wings of a butterfly.
The EB Research Partnership is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa or EB. Their goal? To cure EB by 2030 with the Venture Into Cures methodology, which is changing the model for rare disease research funding.
We’re joined by Michael Hund, CEO of the EB Research Partnership, and Alexander Gambon, Chief Brand Officer at Elongate, who together are bridging the gap between cryptocurrency and charity. We’ll also sit down with Chris and Eileen Attar, whose 5-year-old son Brady has EB, to see how this disease affects their family and how they are determined to have their son live a full life, despite his rare disease.
